- Slug: BC-CNS-Parent Caregivers. 990 words.
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By Deanna Pistono
Cronkite News
QUEEN CREEK – Tyson Coon turns 9 this November. He enjoys reading and watching Disney movies, such as “Frozen” or “Moana.” He’s the oldest of three boys, whose names all begin with the letter T.
When Tyson was 6 months old, he had bacterial meningitis that caused what his mother, Brandi Coon, described as “massive strokes throughout his brain.” As a result, Tyson has a severe type of epilepsy known as Lennox-Gastaut syndrome, cerebral palsy, right-sided blindness and oral dysphagia, a condition that affects his mouth, tongue and lips.
These diagnoses have different impacts on his life. Because of his dysphagia, Tyson uses a gastrostomy tube that delivers food and drink directly to his stomach. He also uses an alternative communication device that enables him to press buttons to select words he wants to say. Because of Lennox-Gastaut syndrome, he has two or more seizures each day.
In 2020, as a result of the COVID-19 pandemic, the Arizona Health Care Cost Containment System (AHCCCS) requested and was granted emergency flexibility to use funds to pay parents for providing specialized care to their children under 18. Though the flexibility was previously extended, it is currently set to expire in March 2024. A proposal submitted by AHCCCS to the Center for Medicare and Medicaid Services (CMS) this September, however, would permanently extend the program, allowing parent caregivers who meet direct care worker requirements to be paid for up to 40 hours a week.
Continue reading “Arizona proposal would help families of children with disabilities by paying parents to be caregivers”